Insights from volunteering by Julie

As designers and researchers on the Ongoingness team, we have committed to undertaking volunteering roles. Aside of the personal desire to make a difference and contribute, this is also meaningful in the context of the project. We need to remove ourselves from our normal workplace where we have expertise and a sense of familiarity, and place ourselves in new situations in order to get a different insight from what we are used to or what we might believe. When working with participants we also need glimpses into their daily lives, the challenges faced and the highs and lows that they may want to discuss with us during the project, particularly if we have no personal experience that we can draw from. This may be in various settings- care homes, hospices, charity support lines. And not least because it is a way of offering help and support to those who are at a difficult point in their lives, at a more simplistic and naïve level than we offer as academics.

For a few months now I have been volunteering at a local Marie Curie Hospice. I have found it such a humble and yet vital experience to have an appreciation of the inpatient ward through a different lens. I already know the hospice well. As a practising and academic interior designer, I’d previously been on a walk-about with an architect who had been involved with the design of the original hospice and continues to be involved with upgrades and modifications responding to the changing environment of hospice care. I know the architecture and interior layout and the reasons behind the decisions made. As a former doctor, I can understand the daily activities of the medical team and the needs and desires of the patients. However, when undertaking the more basic task of serving tea and coffee on the morning round, you take on a deeper understanding and see things from a different perspective. It allows you to observe silently yet respectfully: the staff, the patients, the visitors, the room layouts, the choice of furniture, the impact of medical equipment, the lighting, the views internally and externally. Nobody really bothers you. You can move around without urgency or deadline. And you begin to realise perhaps unexpected things:

“John likes a weak tea with a splash of milk and one sugar”… The domestics know exactly what everyone drinks.

I have previously collaborated with JDDK Architects on a research initiative which is ongoing, examining hospice design and whether the initial design process and the resultant building continues to respond to current-day requirements and promotes patient well-being.

Ian Clarke, one of the former directors, questioned how we can design for the intangible qualities of hospice care, such as compassion, empowerment, trust and empathy. In order to answer questions like this we have to be able to appreciate how end-of-life care is given and received from all aspects and in this volunteering role, I am starting to get a sense of how and where this might happen.

Written by Julie

 

 

Clarke, I. (2009). Design and Dignity. Retrieved from: http://hospicefoundation.ie/wp-content/uploads/2013/04/Ian-Clarke-Design-Dignity-Essay.-October-2009.pdf

Design4Health: Our impressions

Design4Ongoingness

Lab4Living recently held the Design4Health Conference in Sheffield. We welcomed 160 delegates from over 20 countries. It’s always inspiring to see and hear from people in both disciplines (design and health) who are talking the same language. I noticed an increase in presentations around dementia and end of life this time round and have pulled out a few titles here:

  • Designing for playfulness through compassion: design for advanced dementia
    Cathy Treadaway – CARIAD, Cardiff Metropolitan University
  • Evaluation or anecdote: understanding the impact of design. Gail Kenning – University of Technology Sydney, Cardiff Metropolitan University, Eindhoven University
  • Designed with Me: Dementia’s Creative Communities
    Euan Winton – Imagination, Lancaster University
  • Staying in touch as partners – creating islands of normality for couples living with dementia. Sonja Pedell – Swinburne University of Technology
  • Clothing and dementia. Exploring the lived experience.
    Rebecka Fleetwood-Smith – University of West London
  • Designing person centred products for people living with dementia
    Stephen Reay – AUT University
  • Understanding Meaningful Relationships for Families Living with Dementia in Long-term Care. Angelsea Saby – OCAD University
  • Designing a better visit: Touch-screen apps for older people living with dementia and their loved ones in residential care settings. Sonja Pedell – Swinburne University of Technology
  • Life Cafe – A Co-Designed Method of Engagement
    Helen Fisher & Claire Craig – Lab4Living, Sheffield Hallam University

Abstracts and full papers can be found at www.design4health.org.uk

IMG_0431

One presentation that particularly stood out for me was in the ‘Democratization & Design’ strand and was titled; Design With Care – From Art to Applied Design to Income Source, presented by Laila Cassim – RCAST, Tokyo University. Cassim’s paper explores ‘how the linkage of creative activities by disabled people and the strategic use of co-design methods and inclusive processes can enable new forms of financial independence and social empowerment for people who would otherwise have difficulty gaining mainstream employment’.

It was the co-design methods, that gave people a sense of purpose and agency that really resonated with the Ongoingness project, as well as the fact that they were creating beautiful objects that might one day outlive them but leave their mark on the world; it made me think about Ongoingness through Art.

Cassim also included an inspiring example of using peoples experiences and stories as coping mechanisms through the co-design of a card game called Karuta. The card game was also designed and produced by the same group of individuals who had shared their experiences of mental health. We hope to engage in similar methods during our project, the process of designing beautifully personal objects with individuals is as important, in creating a sense of Ongoingness, as the outcome.

Posted by Helen

Conversations about dialogicality and the notion of ongoingness

Jayne and I have been working on a spectrum of ongoingness – drawing from ideas that we’ve all had in group meetings and beyond as a way to aim to see an overarching conceptualisation of the notion of ongoingness. One of the main points we discussed was whether the ideas that are emerging in our project are dialogical (read Wright and McCarthy) or not – also how reflective or reflexive they are. The debate on reflexivity is rich and nuanced, and there are different ways of looking at it. We refer here to Paul Hibbert’s definition that reflection achieves some learning but the learner is the “same person” afterwards – reflexivity achieves learning but also leaves the learner changed as a result (read more). So (very crudely!) we could say that reflexivity is reflection + self-change.

We contacted Pete Wright and John McCarthy to discuss our thinking.  Our conversation focused on how the “surplus of seeing” of the other (see more on Bakhtin) would play out in terms of a dialogical encounter between self and a deceased other, or to-be-deceased self and other.

Does biological death or death of self represent the final loss of all potential because we can no longer enter into dialogical encounters?
Or is that the point of ongoingness to help others continue to find new ways of seeing surplus in the self (e.g. in me) of creating me?

Their input has been hugely insightful and useful. We are now weaving all the threads together and developing further our thinking on what the spectrum of ongoingness looks like.

Books/papers we are reading in relation to this focus

Dialogism and dialogicality in the study of the self

Mikhail Bakhtin: Creation of a prosaics

The rituals pleasures and politics of cooperation

Mortality as Framed by Ongoingness in Digital Design

Taking [A]part. The Politics and Aesthetics of Participation in Experience-Centered Design

Written by Nantia

Ongoingness team meets Mary Mackey

The wonderful Mary Mackey visited us and shared with us her master’s research/art practice which speaks very beautifully to continued relationships and working with and through objects to sense-make in contexts of bereavement. She interviewed 5 women about their evocative objects. She made us wonder what makes an evocative object and gave us glimpses of what is meaningful for people who experienced the loss of a beloved person.

The outcome of her project was an art exhibition where she exhibited her responses to her participants’ stories. A beautiful collection of screenprints and objects. Mary transferred us to a very personal space where repetition, loving and being connected was present.

Written by Nantia

A day out at Seahouses

A few weeks ago I had the opportunity to meet a lovely family with a member that is in the later stages of dementia. In collaboration with Silverline Memories, the Charity that provides “places to go and things to do” for people living with Dementia in Newcastle & Gateshead, James, myself and Dean (our driver) took the family on a tour at Seahouses (a village north on the Northumberland coast). I was helping James to capture the day through photographs, audio and 360-degree videos. The initiative was part of James master’s project that focuses on designing for enriching lived experience for people with dementia and improving social contact with community members through the design of personalised interactive media experiences.

During our tour at the Seahouses, we visited Grace Darling’s museum to find out about the life of a brave woman who rescued 9 people from the sea in 1838. Through her personal objects and a stunning model of the lighthouse we were transported in time and learned about the local history. Throughout the day, John struggled to communicate verbally but he was playful with his two daughters and on our way back to Newcastle, he told his wife how much he loved her. At that moment I realised he was enjoying his time with us.

Posted by Nantia

Thinking of services as a material

Some of our group ideas involved the use of services such as UBER or Deliveroo to create a meaningful dynamic connection between someone living and someone deceased. Ed Jenkins was the first to suggest an idea where a trigger such as someone bereaved being alone in the house for a long period of time could set a scenario in motion curated earlier by their deceased loved one. The sketches capture our early group ideas about this and formed the basis for a team workshop to refine and plan for prototyping.

We took services such as UBER and Deliveroo and started to think about them in terms of their materiality. Many of us in the team are makers – understanding things as a material to work with feels like a valuable way to understand them and think through the possibilities of working with them beyond the obvious level of what we know them to be.

 

 

Reflecting on our own experiences and the notion of ongoingness

Ongoingness: the quality or characteristic of being ongoing and continuing. (Collins English Dictionary)
We have been spending time reflecting on how ongoingness has played out in our own lives and what it means for us to create and curate digital content that can enable dynamic relationships between people – by focusing on our own idiosyncrasies. In response we have all been making sketches, models, short films and artefacts to capture the dynamics of this.

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